That's right, Bug has now set a new record on her seizure-free consecutive days! Her previous longest streak was 17 days (when we first started Clobazam) and now she is at... wait for it...
27 days seizure-free in a row!!!!!!!!
When we had our check up with her pediatric neurologist last week he said that if we went until October 17 (tomorrow) seizure-free than we can start weaning the Trileptal down. The weaning process will be 5 months long. It is a very gradual process so as not to disrupt anything the diet is doing. She is currently on 2 1/2 pills a day so we will take it down by 1/2 a pill a month. We're really hoping that once this gets down to a better level she will seem more alert and not so drowsy throughout the day.
Bug sleeps an average of 9-10 hours at night and then takes a morning nap for 45 mins - 1 hour and then takes an afternoon nap for usually 2 hours. That's a whole lotta sleeping and doesn't leave room for a whole lotta physical therapy and learning activities!
She is still making good progress on her development. Every week at Jim Thorpe with Miss Rachel helps more and more! We are also still working with an occupational therapist that also does some physical therapy from SoonerStart in home once a week.
I read in an excerpt from a book that there is not really a "honeymoon" phase with the Ketogenic Diet. Usually once you gain good seizure-control it is not temporary. If breakthrough seizures do occur it can be traced back to something specific like a "cheat" in the diet or the child being sick or something of that nature and you can almost always get back to ketosis to control seizures. Gosh, I really hope that's true!
Oh, and one more small note: Rayleigh's pediatric neuro looked at her weight gain and percentiles and her BMI, which is at 91% and said that we should call our dietitian at Cook Children's Hospital to lower the calories so that the meals are smaller (but still the same ratio of 3:1) so she doesn't gain too much weight too quickly. We spoke with her last week and she updated the meals Friday so she's been on a smaller calorie intake over the weekend already.
We are 2 months into the Ketogenic Diet and Rayleigh is doing so well! She has taken to it like a champ from the beginning eating every bite every time whether she's tired, full, fussy or whatever. Through September she was still having about 1 seizure a week. Today we are on day 16 seizure-free! KNOCK ON WOOD
She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.
Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!
Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)
In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).
